Endo and me

[Mrsmav]

I was diagnosed with endo at 21 after suffering from the age of 14 with the most horrendous periods.

Not understanding what a 'normal period' was you assume all is just that "normal".

After numerous visits to the doctors I finally got a referral to gynaecology which In some way was a relief and in another was worrying. Being only 18 on the day my appointment arrived, I remember sitting waiting to be called in. I remember being in this small room with my Doctor and he seemed to be looking at me like I was lying when I was describing the symptoms and pain I was suffering.

He told me he couldn't see anything on the scans I had done that day (ultra sound & transvaginal scan) but I knew something was not right! I was offered the option to have a laparoscopy to investigate but was told I didnt have to have it if I didnt want ( in other words please dont waste our time and money)

It made me feel like I was lying, like the pain and bleeding I was experiencing must have been in my head!! However I made the decision to have surgery even if it turned out there was nothing.

I waited about a year for my first operation, it was nerve wracking to say the least. The day came and I nervously went into surgery which would take around 20 mins. However this was not the case for me. Upon examination my surgeon discovered I did in fact have endo and alot of it, I ended up in surgery for 1hr and 20mins. When I woke i had to wait to speak to my surgeon before i could leave. I remember the first words out of his mouth being " I am sorry, you do have endometriosis and we are looking at stage 3. I was 21 wanting a family and was planning a wedding. My mind was blown and I did as I'm sure we have all done i spent alot of time googling when I got home.

The pain after the operation was a breeze compared to the pain I had before and for around 6 months after my OP my periods seemed a little better.

After this time they were again horrendous.

The pain got progressively worse and the bleeding well I went from 10day periods to 21-52 day periods with a 2 week break in between. So it was back to the hospital with a request of a new gynaecologist. My request was approved and with my new surgeon on board I went back down to surgery. 3 hours later I woke to the sight of my surgeon, who now informed me that just 3 yrs after my first op I now had endo and endometrial cysts on my ovaries. I had scarring and one fallopian tube has a clubbed end meaning it does not work! I was devastated the first thought in my head was what about a family, it's all I've ever wanted since I was young.

Again, home I went back to normal life and again the same routine. 6 months later my body is breaking on me again and the period and pain is unbearable. Only I cant keep having surgery every 5 minutes!

So let's jump forward I had yet another 2 ops over the next 5 yrs with the same result only endo has gone up a gear and is now stage4, I had the top layer of my bladder lasers away as the endo had spread to that too!

4 ops on and my body is still no better, if anything it's worse the pain, the bleeding the not leaving the house. The countless time off work because I literally can not stand up!

I went back to my surgeon who suggested artificial menopause? However this is only viable for 6 months as the injection can weaken your bones. So I say yes! OMG it was amazing (other than the first week after I had the first injection)

I didnt have a period for the whole 6 months and then for another year after they stopped the injections. Yes I was on HRT and yes I got hot flushes and felt dizzy but this was nothing compared to what my "normal" life had become over the years. But, having an actual hysterectomy was not an option as i didnt have children and i was desperate to have a family, so it was back to the drawing board once the bleeding returned.

Fast forward to august 2018 when I had my last op, same surgeon who by the way is amazing. He has performed 5 operations on me now and my scarring is minimal. He understands (as much as a Male can) and listens and doesn't make me feel like I'm lying or faking it!

So I go to surgery, I come back, I wake up and I wait to see my surgeon.

When he arrives his face says it all. And he confirms what ive been worrying about all these years. I have tubal infertility. I will not be conceiving naturally even though we spent years trying and now I feel completely lost.

I never imagined living my life without children but this is the most likely outcome for me now.

My husband has been amazing over the years and although I know he loves me, i also know that he is not keen on the ivf route. He says he will do it for me as he knows it's what I yearn for.

But I still feel like I'm stuck in a pit of darkness that I cant escape from. I'm 35 and my hubby is 46 and let's face neither of us are going to get younger.

I'm sorry I've waffled on (that's even if you have bothered to read this far and havent got bored with my constant moaning) I must admit I have become very moany and irritated the last few years.

Please if you suspect anything is not right with your periods get checked, get checked do whatever you need to, to be heard and taken seriously.

Xx